Coping with DIPG- The Ticking Clock

I hate writing this but lately I've been scared. Here it is August already and today starts Ava's 8th month living with DIPG.

When I think back to that day her tumor was found so much of it is a blur and some parts are so clear. Like sitting in the doctor's office and the words "It's a tumor" coming out of his month. I was in complete shock and it was so hard to repeat those words. Now it is much easier to say it but we still struggle with the fact it is there.

After Ava's biopsy we were told we had 9-12 months of time with her. Every month that passes we get closer to that time and I can slowly see her starting to struggle. Kids with DIPG lose their ability to walk first, then talk, then eat and finally breathe. Ava is having a hard time walking. She had been doing it so much more since we got back home but these last few days have been very tough. We have to order a special wheelchair and when the day comes that she has to use it will be very sad for us.

One good thing is Ava isn't scared. She isn't letting this bother her and she keeps pushing forward. I admire her courage and fight so much! I learn everyday just how amazing she is and we are so blessed even given our circumstances.

Nothing is going to slow that girl down! She has always been such a fun loving happy girl and considering everything she's been through and it still shows, warms my heart. Continued prayers for you all, the prayers, love and thoughts never ever stop.

Ava is a very special person, and not because she has DIPG. She's special because she has a presence about her that can be felt when you are around her. I can say personally, she has greatly enriched my life and I consider it a wonderful gift to be a witness to her beautiful spirit. She is, and will always be, my hero.